alchemia

And a thousand thousand slimy things lived on; and so did I


May 1st, 2009

A critique of the recent autism article in Salon: "I am not a puzzle, I am a person" @ 09:07 am


The Salon.com article, I am not a Puzzle by Elizabeth Svoboda has been posted to a few of the communities I am in. Initially, the summaries look fine, but on reading the article, I found that despite claiming to be about Autistic culture, it was simply another article unashamedly gazing at the condition.
Like the deaf culture movement before it, the so-called autistic culture movement continues to gain traction, boasting thousands of adherents among parents, patients and healthcare professionals.
Most revealing here are the words "so-called" which signal that this article isn't about awareness and respect for Autistics. By using these words, the Svodoba immediately sets up autistic culture as doubtful or suspect. 

Additionally, the phrasing here makes it seem as if Autistics are taking over with a kind of religious fervour, making it seem as if the minority under threat are the parents who seek therapy for their children. Considering that there are over 1.5 million autistics just in the USA, plus their parents, siblings, teachers, doctors and others connected to them, even a generous 20-something thousand[1] individuals is still, by far, the minority. In off-line communities, respectful support and services for adults is rare to non-existent. It is also telling that organisations such as Autism Speaks raise and spend tens of millions a year, while groups by and for Autistics (who are often under or un-employed) rarely ask for donations beyond what is needed to keep their websites online.
As its associated swag -- buttons and T-shirts proclaiming "I am not a puzzle, I am a person" -- suggests, the movement aims to redefine autism as something to be valued and protected, not obliterated.
Swag? The swag I see nearly every day are the mass-produced bumper stickers, pins, charms/pendants, and the occasional tot-bag, that feature puzzle pieces or phrases like 'fight autism' or 'find a cure'. I did a search for the "I am not a puzzle" phrase, and after scrolling past links to the Salon article, I finally came to a produce: postcards in someone's Zazzle store.

As for the second part of the sentence, what I see advocated for is that the individual is respected. Additionally, there is an attempt to counter the autism as tragedy by emphasising the strengths of Autistics (eg: for many, a strong ability to focus on detail) This is not denial of associated impairments, but awareness that the impairment is not the cause of social exclusion. Svoboda, like the critics that she quotes, is either ignorant of, or chooses to ignore, this distinction. To value the autism rather than the person (which is essentially the side of fascination that stereotypes savantism that I discussed in part of my last essay), is as dehumanising as reducing Autistics to a medical disorder to eradicate. The quote from Ne'eman, calls for this respect, but the author twists it:
Proponents insist that forcing autistic people to behave like "neurotypicals," a term that borders on insulting, squelches the very qualities that make them unique.
I have never seen "neurotypical" used as, or considered to be, insulting. I'm not sure of the origins, but even research professionals use it, and mainstream Autism societies use it and recommend its use to journalists such as Svoboda. Using respectful and accurate labels is not bordering on insulting.

Ne'eman mentioned that finding a cure [2] wasn't the best paradigm and that inclusion and accommodation / access is what we need much more of.

Behaving like a non-autistic does not mean a person has been 'cured' of autism, anymore so than reading lips and using one's voice 'cures' a person of being deaf. It simply means they have found ways to pass. Passing though takes a lot of work, and I do not mean just learning how to. The behaviours are unnatural to the individual, requiring energy and focus to maintain even after well learned; this takes resources away from learning more functional behaviours that actually improve out lives. Those who have issues with ABA, usually are against it being used in consideration of the comfort of the uneducated public over the comfort of the autistic person. Instead of teaching the autistic not to flap for example, the public should be educated so as to be more tolerant. Using ABA to enable an autistic to perform behaviours that improve their quality of life isn't really contested (for example, teaching self grooming or redirecting self-harming behaviour). At least the article gives some positive examples of coping strategies, such as one mother who taught her son deep breathing exercises and to ask for "headphones that he can use in public, these big 1970s speaker headphones," when sounds bother him. It may look strange, but it addresses his comfort above that of the public's. 

If autistic-rights advocates win their court battles, many treatment programs could stop receiving government money. In 2004, for instance, autistic-rights crusader Michelle Dawson convinced the Canadian Supreme Court to overturn an appeal that would have provided state funding for ABA therapy.
Svoboda misrepresents Dawson here to invoke parental fears, by suggesting that many treatment options could be cut off (this fear is strengthened by the earlier claim that the "so-called" Autistic culture is gaining traction). Dawson responded to the article:
Apart from placing me in a movement I don't belong to, and falsely characterizing me as a "crusader," you misrepresent both the nature of Auton and my role in it… My position in Auton was about autistic people in Canada who, like me, have not received ABA-based interventions starting very early in life… Both [of the other] sides in Auton, as well as the lower court decisions, dehumanized and wrote off this majority of autistics as doomed, as undeserving of consideration as human beings with human rights, and as belonging not in families or society but in institutions.
If you asked, I would tell you that "cultural phenomenon" views of autism have been harmful to autistics, detracting from crucial issues of basic human rights and standards. You won't find "neurotypical" much less "curebie" in my writing, and I sometimes disagree with ASAN's public positions and recommendations...

The writer does however contact, and quote, Harold Doherty, who has an autistic son, Conor, and apparently a condensed copy of Derailing for Dummies in his back pocket…
Who gives [Autistic advocates] the authority to represent autistics? What does Ari Ne'eman know about Conor? …There's a denial in this movement of the challenges of more autistic individuals. It's not a feel-good story to talk about kids who are smashing their heads into things.
Given that Doherty's hostility towards Dawson apparently goes way back, it is apparent that Svoboda, simply took his word for things without checking with Dawson. Perhaps she thought he had the authority to represent others since he not only has an autistic son, but knows online a blogger (Jonathan Mitchell) who "suffers" from autism and shares disdain for Dawson, Ne'eman, and the neurodiversity movement. Mitchell plays the game of who is more disabled, defining those he disagrees with as not autistic, and complains that Autistic advocates don't solve his problems for him:
Nee'man [sic]… has no solution to the fact that I have to be unemployed and celibate, that I can't wrap presents at Christmas time or have handwriting that is only semi-legible that is a strain to get out… All he wants to do is speak for everyone on the autistic spectrum, including those of us like myself who had a speech delay at age 3 and are high functioning autistic rather than asperger's.
While I too was diagnosed in childhood, had speech impairment, have illegible, dyslexic handwriting, am unemployed and so on, these facts do not make my opinion any more (or less) authentic than any other autistic's. Ironically, it is the ability to express oneself in writing, or speech, that others use as "proof" that one is "not that autistic" or even not autistic at all, silencing them. That Mitchell, like Ne'eman and Dawson, have an audience that respects their opinions is a product of past advocacy (and the internet as a communication tool).

The awareness about Autistic culture and rights that this article may bring is undermined through misrepresentation and stereotype. The article leaves the reader with a quick example of the stereotypical "overcoming narrative" combined with the damaging idea of "autism within", discussed in my last essay: Commandatore' son smiles as he looses his stage fright and "bursts into song".



[1]- 20-something thousand is based on the number of registered accounts at WrongPlanet, probably the largest online Autistic forum. Of course, many have never posted, and account registration doesn't indicate one's support for or against Autistic Rights.
[2]- Because autism is something a person is born with, the likeliest means of a "cure" is figuring out the genetics and doing pre-natal testing, resulting in selective abortion if the gene(s) are detected. While pro-choice, I am against developing these kind of tests and "cure" for three reasons.

1. Disability Rights: It sends a message that the disabled person's life is not worth living, which encourages discrimination. It also discourages the development of therapies and accommodations for those living with disabilities [link, link, link].

2. Feminism: In the guise of knowledge with which a woman can make a choice, it actually exerts social, and sometimes legal pressures on women which, actually undermine their freedom [link, link]. "It is chilling to read decisions in wrongful birth and wrongful life suits where judges opine that avoiding the births of disabled children is a social good.... Most frightening in my view, though, are the articles in legal and medical journals suggesting that carrying a disabled fetus to term constitutes 'fetal abuse' on the part of the woman" [link].

3. Genetics: Over time, the widespread and aggressive selection against multiple genetic mutations is likely to result in harm to the population as a whole by reducing genetic variation and increasing the occurrence of other, potentially worse mutations.


 
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Comments

 
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From:tekalynn
Date:May 2nd, 2009 02:51 am (UTC)
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We're doing a mandated autism pledge drive at work (for what? autism awareness? prevention? cure?) for Autism Speaks, and it bothers me a lot because I've heard they're not a good organization for a number of reasons. Fortunately I don't have to ask for donations, since I'm not at a register, but the whole thing makes me really uncomfortable, and it's hard for me to explain why, as the usual response is "How can you be against autism research?!"

It's very headdesky, and I feel caught between my job and my conscience to some extent.
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From:alchemia
Date:May 2nd, 2009 02:58 am (UTC)
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Yeah, it's not easy to sum up in a sound bite or a even a trifold (well, maybe with minuscule type). Could you say that you already donated? (and go ahead and do so, but to another organisation)
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From:tekalynn
Date:May 2nd, 2009 03:15 am (UTC)
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The thing is, we're supposed to be asking customers and wearing cute little Autism Speaks badges. Fortunately, I haven't had to ask myself (or been asked), and no one's made me wear the badge...but still.

I haven't said anything about it to management, because I figure they'll just say it's company mandated.
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From:kyuuketsukirui
Date:May 2nd, 2009 09:28 am (UTC)
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I usually say something like "Autism Speaks does not speak for autistics. They are run by NTs and actively try to silence actual autistic people."
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From:magistera
Date:May 2nd, 2009 03:29 am (UTC)
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"Neurotypical" is insulting? brb, taking umbrage at being called white.
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From:kyuuketsukirui
Date:May 2nd, 2009 09:25 am (UTC)
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There's a lot of that going around in the feminist blogosphere as well. Apparently cis is a really insulting term. *eyeroll*

I think people just long fondly for the days when the antonym for things like trans and autistic was "normal". Blech.
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From:tekalynn
Date:May 3rd, 2009 02:50 am (UTC)
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I like "neurotypical" and "cis" because they're non-loaded, descriptive terms. I am not trans or genderqueer, therefore I am cis. Simple. (As simple as something like that can get, anyway.)
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From:kyuuketsukirui
Date:May 3rd, 2009 04:22 am (UTC)
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Yeah. If I see people complaining about those terms being applied to them, it's always an automatic argument fail in my book.
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From:caesia390
Date:May 2nd, 2009 08:42 am (UTC)
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I am learning a lot from these essays, Al. I don't know how to say how much I appreciate being able to read them. Is there any chance you might publish them outside your journal?

alchemia

And a thousand thousand slimy things lived on; and so did I